A slight change of plans..!

2300 2/11/09

Today was was what you would call a normal day. A fair amount came out over night at various times & it all systems go from 0600 this morning. Plenty of visits to the toilet with Wally trailing behind & a major change to the overall management plan.

Most days we try & get a Skype call in to to someone & this morning it was Catherine & Neavey. It was all going well until Neavey hit the mute button & for the next 5 mins her camera was looking at the roof not hearing a bloody thing.

Lovley Jo visited & it was time to do some eyeliner & pay a visit downtown to the Hospital shop for the Cbeebies Weekly..actual title! It came complete with glow in the dark finger puppets...they don't... but I'm not going to wake her to explain!

The clickity clack shoes were a big hit in the corridors of the Mars Bar.

The Jitterbugs fishing game is becoming a regular favourite when the designated family minder get too boring, as is her new quilt & bandana.

Neavey & Catherine came in for dinner & as it was a full moon we got a whole 15mins with no lines so we could head out & Catherine could explain how the solar system works...I've got no idea.

The interesting part of the ay came when I was talking to one of the Docs that comes around each morning. Now the difference here is that every doctor knows whats going on with every patient. So in terms of knowledge it's very consistant. I was saying how we had been told by a number of Docs that if Anouk was in good shape she we go home on day 7, after the last lot of Chemo went in, & when she became Neutropenic & got too high a temperature she would go straight to the local hospital & they would manage it from there. Once her blood levels had got back up it would then be back in here to start the next cycle.

So when my version of events drew a blank face..& the Doc said..."are you sure thats the case.." I knew something was about to change. Cutting a long story short & without going into too much detail..we will basically be living in here for the next 4 - 6 months...ish..with bonus days at home just before the next cycle begins. Basically the team here feel much happier if they are looking after her when it comes to temperature & infection control.

Apart from that...she is absolutley beautiful & we had a great day.

So far so good for the 2nd Cycle

2130 1/11/09

It's been a busy weekend here at club chemo. Lots of visitors, lots of walking around...lots of Hi 5! All be it the new American version..! We did manage to squeeze a few Peppa Pigs in today so I suppose we can't complain. The cousins came in today & also the cousins of the cousins...it was a full house.

On the drugs front things seem a little calmer than the 1st cycle. Anouk is getting the exact same drugs at the same time of the cycle but so far she hasn't chucked up as much & has started to sleep sort of normal....ish. For the last 2 nights she has had a full nappie at 0100, which only I can change & then a chuck at about 0500..ish..nothing major in terms of chuck size. Last night she slept from 3.30pm to about 7pm when Rolf & Inga visitid. She then dropped off at 9.30pm, nappie at 0100, chuck at 0500 & then back to sleep until 1100am this morning. No sleep today & she has gone down at her normal time of around 7pm. There have also been fewer tantrums in the last few days...maybe Anouk is happier in the environment...who knows! Now that I have said all of this the overnight is bound to be a nightmare!

Anouk loves having Skype calls with people & most of the conversation is centred on who's not there. So when Grandad calls it's..."where's Grandma" When we call Granny Sue...it's "where's Pa or Perro" (the dog). We had a great chat with Sacha, Duncan, Lexie & Angus on Saturday morning & they will all be coming over for Christmas.....it's going to be busy!

She does give the time of day to most of the Nurses & staff & even enjoys pushing in her own medicine. Except for the time when she just grabbed the syringe & squirted it everywhere!

Weight wise Anouk has been putting on a bit even with the overall reduced amount going into her tummy. At the moment she is only getting 20ml per hour as well as fluids. Sometimes she will have a bit of cheese or some yoghurt, but overall doesn't complain about being hungry.

As well as the MRI scan at the end of this cycle Anouk with undergo Stem Cell harvesting...mmm another General Anesthetic! She will have a access tube inserted in the groin area & the whole process with take 3 days.

Neavey continues to enjoy visiting & making things in the playroom. Last night she was causing havoc in the village with trick or treat. Catherine made sure that they went to houses of people we knew...just in case!

Sue & Kalum very kindly gave Anouk a great Elephant Alphabet puzzle. Safe to say the big kids had a much entertaining trouble finishing it as Anouk did..! WE.. did get there in the end.

On Friday, while we were waiting to be admitted, we headed down to a local park for swing fix...a bit hard now that Wally the trolley is part of the setup!

Club chemo take 2!

2300 30/10/09

We have had 3 great days at home with Anouk but now we are back in the Marsden for a Kidney function checkup & then back into a single room (9)...woo hoo...on the ward for the 2nd cycle of chemo. These 3 days at home have in fact been unexpected bonus. We had been told from the start of the 1st cycle to expect not to go home until after the chemo for the 2nd cycle had gone in, that would be a week from now! However due to her solid recovery we were allowed out.

So home for Tuesday, Wednesday & Thursday of this week. As it was half term the cousins were around so there was some trampolining & walks on the hill to be had.

It doesn't look like it but Neave was very excited to have her sister back at home & do doubt happy to be sleeping in her own bed. At one point she did ask to grandma if she could have a sleep over at home?

Wednesday afternoon was taken up with an hearing test that was all good & Thursday was spent inside being entertained by our wonderful friends & family who have continued to give anouk & Neave an amazing amount of presents & the whole family continued support & love...thank you all so much..we can't begin to tell you how much it means to us.

All during the 3 days Anouk has been on great form. Sleep times have been a little up & down though. She will go down OK but will wake most nights after about 6 hours & want to come in with us! The only issue was the level of food her damaged tummy could handle. When she did wake she more than often was feeling sick so we turned her food off at that point, but during the day it was all guns blazing as she was up to 110 ml per hour which is far higher than anything she can handle while the chemo party is on.

Anouk has just gone off to sleep & is getting 6 hrs of IV pre drugs fluid before she gets chemo 1 over the following 6 hrs...sick trays at the ready. So far, as expected, we have walked the ward, done the playroom & watched the American version of Hi 5 about 50 times! Neave was here during thde day & made friends with one of the other patients who is about her age. The 2 of them ran around most of the afternoon tearing the place up. We assumed the other girl was in a fit enough state for all of this as we doubt Neave would have asked if her blood levels were up for it! Neavey's nurses uniform has come along again & she is planning on helping out over the weekend.

Now that we have been through the 1st cycle we could possibly only be in here for 7 days & then back home. If she gets a high enough temperature at home it will be into the local Hospital in Guildford to manage that, but we will see how things go. If we are very lucky we may be able to get Anouk to Neave's birthday party next Saturday in the village hall....maybe.

It doesn't feel nearly as strange coming back in club chemo. The 3 days at home were at times strange in the sense that she was in such good form that you sometimes forgot what the situation was...& then one look at the back of her head sorted that one out.

at home for a few days...

We are home...

We were delighted when we were told yesterday that Anouk was well enough to go home... the turn around was amazing, she has been willing to walk, play, laugh, be her usual cheeky self with her sophisticated sense of humour - all tremendous signs that were echoed in her blood results. But every silver lining... because she is doing so well, we will be starting the next round of chemo on Friday - bringing it forward is a good thing, but clearly has the downside of less time together at home.

Anouk has to have a hearing test tomorrow afternoon at a hospital about an hour from home, and will than be admitted for a kidney test on Friday followed by admission for chemo starting that evening.

But in the meantime... she has been delicious, her usual gorgeous cuddly self.

Anouk's hair has been falling out and she was keen for a hair cut, so I cut it to a few cms all over, she caught a glimpse of herself in the mirror and as expected said "i've got funny hair, it is short" i responded "you look beautiful" she said " i don't think so, and then laughed "but my head looks smaller" We tried on various hats of which only one enormous (aged 10yr old) fleece one with no elastic was a gooer, and even then she is only prepared to wear it outside to keep her head warm.

The Marsden was very accomodating in helping us get home as soon as possible this morning. We have spent the time at Mum and Dads with the "cousins" Julia and Ben are in Tooting, preparing for a move to Surrey in January! the children have been accepted in Cranleigh schools and we are looking forward to having them living nearby...

I have no idea what happened this afternoon as i slept for three hours but apparently the children behave like typical sleep deprived irritable siblings during half term - all rather reassuring really - particularly as i didn't have to play referee.

Lunch at Grandmas and Grandads

Packing up - we had moved in and so it took a while to pack up and move out..

Happy to go home...

We're on the way home!

Until friday...& then it's back in to start round 2!


-- Posted from Richard's iPhone

All going well were going home for a few days!

2200 26/10/09

Anouks has made a very good initial recovery from her first round of Chemo & if she is in good shape in the morning then it will be home until Monday next week....thats what we call...bloody fantastic!

As of this morning she had maintained a normal temperature for 48hrs which is the key sign that she is over the worst of the side effects. Over the last couple of days she did have some severe tummy aches, which was relieved by "Quacka" the microwaveable Duck, but that all seems to have passed now. I have been a work for the last three days & she has sounded better on the phone each day. Anouk answered the phone this morning with a very..animated .."hello daddy"...one of the best things I've heard for along time.

Neave stayed in the hospital Saturday night & as it turned out she had a high temperature & had to be given something by the Nurses!

She will have to go back in on Friday for a Kidney test & assuming her blood levels get to the required level, it will be back in next Monday for...club chemo round 2.

All very exciting if it happens & we'll post some pics of the homing coming tomorrow.

Neavey has her first club chemo sleep over!

2230 24/10/09

After a lovely visit from Sharon, pizza wine and generous gifts from my Medwyn (work) colleagues last night we had a much better day today - only 1 vomit, no temperatures, more white cells, a smattering of neutrophils and a much happier Anouk, there is light at the end of the tunnel. Neave arrived early with Ella and Issy, Issy as usual was delightful company for all of us and bought supper... Nick and Richard visited this afternoon with the troops - Anouk was delighted to see Dylan with the 'funny hair' (it is red) - Anouk is not sure what to make of her hair situation, she wanted to make a hat out of tissue paper this morning, so I think that we need to try some head gear on to see if she tolerates anything, Julia is going to bring a selection tomorrow.

Neave has been here all day and has been absolutely delightful, Morag bought her a nurses uniform and the nurses supplied her with syringes, bowls, dressings etc and she has played nurse to dollys and wounded knights (Bryn and Nye) all day. She helped change Anouk's bed and got given a sticker chart 'I helped Mummy and the nurses" with a sheet of smily face stickers the look of absolute delight on her face was priceless. She has talked about how she is feeling, how much she is missing Anouk and how she feels sad that she is missing out on attention - Mummy saying 'wait a minute' is not good enough... She also told me that she is very special - if she feels sad at school she gets to read to the head teacher, if anyone else feels sad they get to read to the class room assistant!!!! She is very switched on and open about her feelings which must be a good thing and it doesn't take long to put that infectious gorgeous smile back on her face. We are starting to contemplate home....if Anouk's recovery continues like it has over the past few days....it will be sooner than expected...perhaps end of this week - yee hah.